We need to start looking for possible bone marrow donors for Bertrand. This is on the chance that his lysosomal condition is one of those which can be treated with such a transplant. If by some miracle we have a matching donor lined-up (next to impossible) we can get the transplant in a matter of weeks.
PLEASE consider getting checked! The closest match is usually a sibling, but Bertrand doesn't have any. And, neither Matthew nor I may be an acceptable match. :'(
"Doctors look for a donor who matches their patient's tissue type, specifically their human leukocyte antigen (HLA) tissue type. HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The closer the match between the patient's HLA markers and yours, the better for the patient."
--National Marrow Donor Program
The National Marrow Donor Program has a great page on the ins and outs of HLA Matching and a list of Donor FAQs.
We'll be in touch with Bertrand's doctors this week for many things, including determining his HLA.